I wanted to say that I am grateful to each and everyone that reads this blog.
I started this blog a while ago because I was confused and angry about the information I found on social media regarding celiac disease. I was disappointed in the lack of scientific information, incorrect information regarding medical diagnostic procedures, and the lack of a common sense approach to a gluten free diet.
This is a list of the things I have learned after years of a gluten free diet, trying every thing under the sun to feel better, and just trying to live my life. It is sort of my manifesto of how I see celiac and what it means.
Celiac and keeping a gluten free diet is hard. The science indicates we get more gluten than we think, that our immune systems are permanently changed, and that many people with celiac never 100% heal from the damage our bodies inflict upon itself. It isn’t pretty.
The upside to celiac is that the gluten free diet is (theoretically) healthier than the standard american diet. I say theoretically because if you replace gluten items with their gluten free counterparts, that is not healthier. Gluten free items are higher in fat and sugar to replace the gluten. But eating a diet focused on whole foods – fresh fruits and vegetables, nuts, eggs, dairy, seafood, and proteins – will help.
Many of us still have ongoing issues after initiating the gluten free diet. I often seen people recommend removing dairy or more of the top 8 allergens from the diet. When making a major overhaul of a diet to eliminate gluten, I think it is just overkill. To eliminate gluten is hard enough, just give it some time to work.
Also, after diagnosis, give yourself a year to get the diet right before eliminating additional foods or food groups. I think for the first year, there is so much to learn and lots of mistakes are made. After a year, you have a better idea of what a gluten free diet is and how to keep yourself safe.
Cross contamination is bad, but it isn’t the boogeyman. It should be avoided but not to the point where you don’t live your life. Do the best you can on this one, but don’t skip the birthday parties, weddings, or vacations because you are afraid of eating at restaurants due to cross contamination.
The risk of celiac cancer is low when a gluten free diet is maintained. Enteropathy associated t-cell lymphoma (EATL) or celiac cancer is low. Purposefully eating gluten after diagnosis increases the chances of this, but EATL is still rare. So, maintain a gluten free diet to reduce your chances of this fatal cancer.
After a year on the gluten free diet, purposefully have one meal with gluten. You will then know your reaction to gluten and it will remind you how sick you get. It won’t kill you, unless you are allergic and then absolutely do NOT attempt the one meal gluten challenge. I think everyone should know what their reaction looks like. When I did it, I was shocked at how different my reaction was to what I thought it was. I thought my gluten reaction was diarrhea, but really it is vomiting, fatigue, and constipation! Now, I know for sure when I get glutened and there is no doubt.
Celiac doesn’t flare – you consumed gluten intentionally or unintentionally. It got in your body. Bloating and gastrointestinal distress can come from a million places, most often when following a gluten free diet, it isn’t from gluten.
Get a proper diagnosis – either triple positive or blood test and biopsy. I would HATE that anyone embarks on this difficult and life changing diagnosis without complete confidence in their diagnosis. A single blood test at a single point in time has the chance to be wrong. TTG IGA can fluctuate based on recent illness, other autoimmune diseases, or just a mistake at the lab. Just get a proper diagnosis and if you choose not to that’s okay too.
I believe a cure for celiac is in the works. I think first we will see help in the way of a medicine to prevent symptoms from cross contamination. Eventually we will see a cure – one that stops the damage from celiac on a gluten containing diet. When I was first diagnosed, there was nothing – no medicines were even in clinical trials. Now we have many researchers pulling on many threads in order to find a solution. (If you can, please volunteer to help with research.) I’m hoping in the next 10 years there will be something great, but I’m really hoping for 5 years.
I write because I want to provide solid scientific information. Sometimes I don’t know what to think of the information I read, but I feel like we should all know what is being done is celiac research. I want us to be hopeful and positive that good stuff is happening in celiac research and there is potentially a cure on the horizon.
I want us to not feel alone. I know a lot of us struggle – some on a daily basis and some less often, but we all have bad days. I want you to know I struggle too. I don’t always have the right answers, but I keep fighting to work through it to the best of my ability. I try to keep a positive outlook and be a positive reasoned voice in this community.
Sometimes I can be judgemental and harsh. Everyone is on their own journey and while I may not agree with what you are saying, I need to think about it before I type. I will say this – if I cannot find the science to back up what people are saying, I will have a hard time agreeing with what is being said. I have a tendency to be a little viscous people espousing downright inaccurate information – I will try to tone that down a bit. I can think of one thing that infuriates me, but I will keep that one to myself.
I hope this blog speaks to you and I hope you get something positive from it. Thanks for reading. This went way longer than I anticipated, but I wanted you to know I appreciate you.
PS – Monday will be about “cross reactive” foods.